How do you survive a broken heart? | Down syndrome Achievement Center, Syracuse New York
How do you survive a broken heart? With the help of doctors, nurses, and cardiologists. With the love and prayers from family and friends. With hope as you kneel in the hospital chapel wondering why God would give you a baby with special needs if he was just going to take him away after only a few months.
Jared survived his broken heart. It beats within him now, over 21 years later, repaired by a surgeon of whom I am in awe. Jared was about 6 months old when he had to go in for surgery to prepare one hole and one leaky heart valve. What we believed would be a brief stay turned into a nightmarish 3 weeks soon after surgery when Jared’s tiny heart struggled to survive. I remember the crash cart and a group of doctors rushing by as I sat in the waiting room one afternoon. “Oh that poor family”, I thought to myself, not knowing that all that panicked racing was for my baby. A while later, one of Jared’s doctors came out and asked us to follow him to a private room so that we might talk. The walk took too long, so I grabbed his arm and told him to just tell us, and he did. He told us to go into that room and prepare for the worst, to call our family, to pray. That’s when I went to the chapel. For the first time, this baby with Down syndrome whom I hadn’t yet accepted completely, became the most important person in my life. The disability took a back seat to the child, to his heart. Since that day, Down syndrome has not defined my experience with Jared. He became mine, just Jared, and I would do everything in my power to facilitate his healing.
And so I left that small room and went back to the waiting room to wait for my baby. He survived that second surgery, and we cheered, and we danced, and we cried. He survived the second time they pushed back his ribs to fix that broken heart. And I survived having had a child born with Down syndrome. Three weeks later, I left that ICU, that hospital and took my child home. He still goes to the cardiologist occasionally for a check-up. And I’m always transported to that bleak time over 21 years ago, when my baby, my tiny baby needed the help from so many people to repair a heart, weakened as a result of a genetic twist of fate.
Randi Downs-Jared’s mom
Thank you so much Randi for sharing such a ‘bruitiful’ part of your and Jared’s story. We of course are so glad Jared is here sharing all of his awesomeness with us.
If you are looking for more information on heart issues here are a few links to helpful information.
Randi, a compelling sharing. Jared, I imagine you never tire of hearing the story, the one about how so many people love you and your family. I remember as a young Inhalation Therapy Technician, that crash cart your mother speaks of, the translucent green respirator I monitored with attached tiny orange tubes reaching into the side of the clear incubator. I don’t recall a name I remember fragility yet the promise of life. A multitude gave care every second twenty four hours a day while much of that time a mother, a father dressed in a sterile gown stood close by. This was not about Down syndrome. It is with this intensity that the Advocacy of GiGis Playhouse pushes the curve forward, yes for all with disability but also the rest of the world society. Jared, your are a picture of the strength of Love. Richard Reilly – The Grandparent Connection
Thank you Rickard of always being an amazing source of support and encouragement xoxo
yes, Richard. You painted the exact picture. Yes, we are so very lucky,very blessed. Thank you and bless you.
Randi- I feel like I’m walking alongside you as I’m reading these words.
Such openness and support ls exactly why your family was given the Gift of Jared . He is a powerful example of the real meaning of a “life to be lived “! I am fortunate to know this wonder-filled young man .Love you Jared!
And I’m walking alongside you, Amy. It’s what we moms do, isn’t it?